Coming Home

Thank goodness we'll be flying home tonight! We met with Dr. Thiele and it appears Oliver is having significant high amplitude discharges during his sleep. The longest period of time Oliver went without a burst was 30 seconds. Can you imagine how hard it is to rest if that is happening in your brain? No wonder he is having these issues. These are very likely interfering with his development and explain the loss in skills we have seen. We'll be trying an increase in Onfi to help with these nighttime issues in lieu of staying here over night and getting a high dose of Valium.

While we were monitoring he had 4 seizures, 2 were when he was asleep and neither Andrew or I caught them. He had the most significant seizure yesterday afternoon, which was one of the worst we've ever captured while on EEG.  The seizures are tonic and are coming from the left side (F3 led for those that know/care). His breathing is more problematic now than it used to be, as he often gags and gasps near the end of the seizure. It is awful to watch.

Since we still see most of the seizure activity originating from the left side, we are seriously considering a second surgery sometime in 2014 (if the clinical trial drug doesn't address the night time issues). When we come back to start the trial (tentatively in February) we'll also meet with Dr. Duhaime (who we didn't get to see this time). We'll discuss doing brain mapping via a machine called a MEG to make sure we are being extra safe near his motor and sensory strip. We hope Oliver will tolerate and cooperate with how the MEG works (you can't sedate the patient).

This second surgery (if we do it) will have more potential for long-term damage, but at this rate we're feeling that a more aggressive treatment is warranted than 2 years ago. Things were much more hopeful then, and it is hard to watch the old videos, even the ones post-surgery...Oliver has certainly lost some of his brightness.

We are grateful for a quick trip that yielded helpful information, a plan of treatment moving forward, and an amazing team at MGH that takes such good care of Oliver.